UK Disability History Month 2023 – “My invite to the party”

UK Disability History Month 2023 logo cover art

The theme for UK Disability History Month (UKDHM) 2023 is disability, childhood and youth. In this blog, we hear from a colleague working in our health and care partnership on how living as a disabled child without a diagnosis was only the start of their journey…

‘Shy’, ‘overweight’, ‘limited’, ‘unpopular’ – all words that were used to describe me as a child. Looking back, I can still remember being afraid to put my hand up in class (even when I knew the answer).

Those were the labels used by others but what sat behind those was a shy, isolated and lonely person who just thought differently.

My appearance, my perceived limited academic abilities, my lack of connection to others and the persistent bullying I lived through only reinforced that negative self-image. When I decided I wanted to be a doctor when I grew up, I was scoffed at – my lack of self-esteem was reinforced instead of being challenged.

I was written off by so many that I wrote off myself.

It was not uncommon when I went to school for anyone who wasn’t neurotypical to be treated as a nuisance, as disruptive or as less academically gifted. In my case, it was the latter, I behaved impeccably at school. Awareness was far lower than it is now and so difference was viewed as something to be punished, controlled or hidden away instead of embraced and celebrated.

Unlike at school, I was viewed as ‘cheeky’ at home – I answered back, I made lots of noise, when I followed a hobby I did it full throttle. I liked my music loud and once I found a friend outside of school, I found my voice (and my sense of humour) and I became loud too.

So many prejudices in society seemed to combine against who I was – I wasn’t a quiet, studious, well-behaved young lady with ‘straight As’ and an unquestionable respect for authority at all times. I didn’t conform, no matter how hard I tried to. I was a square peg in a round hole.

“As a child I was waiting for the party invitation that never came, but I was waiting for the wrong thing… I was waiting for the grace and acceptance I hadn’t learned to give myself yet.”

Like many neurodivergent people, I didn’t receive my diagnosis until I was an adult. I was diagnosed with attention deficit hyperactivity disorder (ADHD), dyspraxia and dyslexia at the age of 38 and it was world-shattering to me.

All this time, all my struggles, all the shame and blame I carried – it was a lot to process.

I felt sad, I felt frustrated – it took a long time to process and I was grieving for what could have been.

What could I have achieved if I was supported properly as a child? How could my life have turned out if I was living in a neurodivergent-friendly world, instead of a society geared up for non-disabled, neurotypical people? What was influenced by my neurodivergence and what was just bad luck? Bad choices? Or were the cards stacked against me from the start?

A few years on, I have reflected on my journey; on who I was then and who I am now. Joining the NHS is what led me to my diagnoses and I was well supported when the news came in, as hard as it was.

I have found an area I love to work in where my differences are strengths, where the way my mind processes information is considered a superpower instead of something to be minimised, masked or hidden.

I spent so many years feeling like I was still that child waiting for the party invite that never came, but if time has taught me anything, it’s that I was waiting for the wrong thing. Ultimately, I was waiting for the grace and acceptance that I hadn’t learned to give myself yet. I’m still working on that now, but there is hope on the horizon.

This UK Disability History Month I’d urge you to reject those stereotypes of what a ‘well behaved’ child is, to challenge the idea that difference is something to be hidden, to embrace the diversity of our disabled communities and to offer non-judgmental support to those who are parents, carers or guardians of disabled children.

But please also take time to give grace and acceptance to yourself too… not one of us is perfect, sometimes there’s no ‘a-ha!’ moment about our differences, but each of us brings something unique and invaluable to the party (whether we get the invite or not).

You can find out more about UK Disability History Month (UKDHM) and access our downloadable resources, book onto an event or browse local support services on our UKDHM page.